I am still feeling decent so I left Dan in the hotel on Saturday and met a co-worker at a huge mall. I did take a few breaks, but I walked that whole mall. Yay!!
The next day Dan booked an hour walking tour of Fenway stadium. Guess how many stairs there are in a stadium built in 1912?? Yeah, that was a lot and I may have been bringing up the rear of the tour, but I got through the whole thing and still had energy left for Quincy market. AND…I left Dan in the hotel again so I could run to the outlet mall. Of course the 2 stores I wanted to check out were on opposite ends, but I did it. Yes, I’m proud of myself.
Today we were at Mass General really early for my CT scan. Luckily the doctor took us a couple of hours early or we would still be in the car. Nothing exciting happened with the visit. Essentially she says I can come off the steroids from her perspective, but she wants me to consult with an endocrinologist before I fully wean as the body can stop making cortisol when you are on steroids for a long time. That seems fair. She’s also switching me to a different form of cellcept which is what is replacing the steroid as we suspect some of my GI issues are from the cellcept since it hasn’t stopped even with my break in treatment. Hopefully my breathing will continue to improve and I’ll start weaning off that too. I’d like to keep chipping away at these side effects and have to take less medicine. Lately it seems like I keep having to take more to counteract another med. I feel like the old lady who swallowed the fly.
My oncologist was out of the office today and they only had authorization to restart my medicine at a lower dose so I’m waiting for tomorrow to see if I can start at the full dose. I’m not giving up that fight.
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